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Meeting the educational needs of pupils with Down syndrome in mainstream secondary schools

Gillian Bird and Sue Buckley

This article provides information and advice to secondary schools that are including a pupil with Down syndrome. The advice is based on our experience of observing and supporting individuals in secondary schools that are including pupils with Down syndrome in Portsmouth and South East Hampshire. It informs secondary schools that have not yet included a pupil with significant learning or language difficulties that the key to success is through developing systems and procedures for meeting the wide range of individual educational needs of all young people. The article emphasises the importance of developing opportunities for: (1) personal and social development, (2) teaching, differentiation and support for learning, and (3) training for staff on all issues related to disability awareness, inclusion and expectations for people with learning and language disabilities, including Down syndrome.

Bird G, Buckley SJ. Meeting the educational needs of pupils with Down syndrome in mainstream secondary schools. Down Syndrome News and Update. 1999;1(4);159-174.

doi:10.3104/practice.148


The benefits of inclusion

Inclusive schools are good schools for everyone

In the authors' experience, where schools are sensitively and thoughtfully meeting the needs of many young people with special educational needs they are usually good at meeting most of the needs of young people with Down syndrome. These schools are often also achieving outstanding academic outcomes in General Certificate of Secondary Education and 'A' level examinations. For example, one of our local secondary schools has three teenagers with Down syndrome, each with a different profile of needs, successfully included and this school was near the top of the local league for examination results. There is no evidence that a school that is meeting the needs of pupils with special needs is going to adversely effect the education of the other pupils, the evidence is quite the other way around.[1]

Inclusive schools are better than special schools for pupils with Down syndrome

The evidence is that the teenagers with Down syndrome who are being educated in mainstream schools are gaining considerable benefits in academic skills, communication skills and social independence. We have just completed a survey of the progress of 46 teenagers in Hampshire, of whom 18 are in mainstream secondary education and 28 are in special schools. This study is an extension of the one we carried out in the mid-eighties [2] so we are not only able to compare the effects of mainstream versus special education but also to see if today's teenagers are benefiting from progress in the quality of education and in social attitudes. We have collected information on a wide range of issues including, health, behaviour, sexuality and social lives in addition to personal and social independence, communication skills and academic progress. We also have family views on their experiences and needs. A more detailed report of this study and its practical implications for families and schools will be the leading article in the next issue of Down Syndrome: News and Update (2.1)[3] and a full research paper is in preparation.[4]

The main point of relevance for this article and the education debate is that it is clear from our data that children with Down syndrome benefit from being educated in mainstream schools. The teenagers we describe as mainstreamed have received all their education in mainstream schools, as full members of the ordinary classes, not in special classes. This group are significantly ahead of their peers in the special schools on standardised measures of communication (receptive and expressive spoken language), literacy, and social competence. They are not significantly ahead on daily living skills (practical personal care). They display significantly less difficult and anti-social behaviour than those in special schools. There is no evidence that these two groups of children varied in ability when they went into the school system at five years of age. At that time, most of Hampshire was still sending children with Down syndrome to special schools but in part of the county mainstreaming was being supported. There is a wide range of ability in both groups of young people at the present time. There are young people successfully included in mainstream secondary schools who are less able in academic terms than many of those still in special education.

Little progress in special schools in 12 years

The progress of the teenagers in the special schools is not significantly better on any of the measures that we took in both 1987 and 1999, except on literacy and numeracy. We would argue that this reflects progress in the development of a more academic curriculum in most special schools. Progress in reading and numeracy are dependent on good instruction from the teachers. Progress in communication, social skills and behaviour may be much more dependent on the peer group and without the role models and friendships provided by typically developing children, teachers in special segregated schools cannot raise outcomes, however hard they try. The findings of our study support and extend to secondary level the conclusions of other research studies available to date, reviewed in a recent paper by Cunningham, Glenn, Lorenz, Cuckle and Shepperdson.[5] They state "In terms of measures of academic attainment and self-sufficiency, there is little evidence to show that attending special schools is more beneficial than mainstream schools in the preschool and primary years; what evidence there is, indicates more advanced progress in mainstream settings." [5]

UK experience of mainstreaming

Most experience is in the primary age-range

Examples of good practice, publications and training to assist mainstream primary schools to meet the educational needs of children with Down syndrome are available nationally. In most education departments children with learning disabilities attend mainstream schools, with success usually linked with the school and supporting education department's level of inclusion awareness, skills and development. The experience of the thousands of UK primary schools that have educated children with Down syndrome over the last ten years has helped to develop the expertise of teachers and other education professionals.[6-13] Fewer young people have progressed through secondary schools, although in the past five years this situation has begun to change and significant numbers of pupils are currently in mainstream secondary schools. Many more young people and their parents are anticipating transfer to secondary schools in the future and the number of mainstream secondary school pupils with Down syndrome is expected to rise sharply.

Need for secondary training and information

Information based on the experience of secondary school staff, the young people themselves and their families is in demand by secondary schools and parents alike. It seems likely that the circulation of information and training will be led by organisations and individuals working to create opportunities and equality for people with Down syndrome, as it was in the past for primary mainstreaming [6/9/10/14] rather than through a centrally led national system of training, education and school development.

Need for a national strategy

It is right that schools should have the independence to meet each individual's educational needs, free from labeling and associated expectations. However, the lack of clear national guidance may continue to contribute to the inequality of educational opportunity for children with Down syndrome. At present successful mainstream placement and quality of education are dependent upon the practice of the education department where the child lives and on the skills and attitude of staff working in the school attended by each child. Without adequate guidance and training the risk for widening the gap between best and worst practice for educating pupils with learning and language disabilities in secondary schools remains. We would like to see the same planning and support for inclusion on a national level as there has been for the National Literacy Strategy – that is the development of materials and a training programme that reaches all schools and includes staff at all levels including head teachers and school governors.

The educational needs of teenagers with Down syndrome

Access up-to-date information

Through research studies and by assessing children and teenagers with Down syndrome we are now better able to describe the development and academic progress of many children and young people with Down syndrome [15-27]. It is important that providers of training and schools use up to date research to inform staff, and that training information is regularly updated, as young people with Down syndrome are constantly benefiting from improved social, leisure and academic experiences as well as better health, family and community support services.

Recognise adult life expectations

All staff will need some training and understanding about each pupil's individual profile of language and learning skills and how to support him or her to develop his or her skills in the social context of a large school. Staff are also likely to benefit from developing their understanding about the future expectations of pupils with Down syndrome for their adult lives. Most will be able to leave home, live in some form of supported housing, enjoy supported employment and lead quite ordinary lives in the community. Many will enjoy ordinary adult relationships with partners and some will marry. It is so important for teachers and families to recognise that the social, emotional and educational needs of teenagers and young adults with Down syndrome are mostly the same of those of other children and young people. Success in the community and in the workplace as an adult requires the opportunity to continue to grow and to learn in the mainstream with those who will later become neighbours and work mates. All young people with Down syndrome will do better in life with the continued support of a good mainstream secondary school as well as continued support from their family and friends.

A wide range of individual needs

Like all young people, individuals with Down syndrome are different from each other and each will need his or her individual educational needs met in school. Young people with Down syndrome may have only mild learning difficulties and be little different from other slow learners in school, others have more significant difficulties. Some will come into secondary school with Reading Ages of 8 years to 9 years, others may have only limited independent reading skills. The same variation will be seen in number abilities and in general and subject specific knowledge. In terms of behaviour and personality, young people with Down syndrome vary just as widely. Most are sociable, well-behaved and sensitive individuals, others enjoy being more challenging in the mischievous sense. If an individual engages in really difficult behaviour then we need to look for the causes because it means some aspect of his or her school life is not being planned to meet his or her needs appropriately. Some are shy and some are outgoing, some anxious and some confident.

Dispelling myths

The mythology of placid, stubborn and music loving individuals is as described – myth. So is the notion of ceilings or plateaus. All the young people that we work with or have studied continue to grow, learn and develop all through adolescence and early adult life. Indeed, adult life and independence often seems to offer a spurt to individual growth. While it is important to emphasise individual differences, there are some difficulties that are associated with Down syndrome and influence the educational progress of all young people to some degree, in particular language and working memory difficulties.

Language and learning disabilities are associated with having Down syndrome

Delay in speech and language skills and in working memory development is to be expected for all teenagers with Down syndrome. Most young people with Down syndrome will not have clear and fluent expressive speech. [28-31] They will have difficulties with phonology and articulation, so words are not always easy to understand. In addition, they have difficulty forming long sentences with all the grammar correct. This results in rather 'telegraphic' speech which may be difficult for teachers and friend to always understand. The majority of young people have much better comprehension of language than their spoken language suggests, so their understanding is at risk of being underestimated. Most young people will also have short term or working memory difficulties.[32-37] These differences make it more difficult for people with Down syndrome to access, understand and process information at the same speed as people who do not have cognitive and language delay, but they do not prevent them from learning many of the same things. They need the information presented in a clearer, more ordered way, with explanation about the links and associations between information to build their knowledge system. They may need more time to learn and understand and more practice to be able to apply their knowledge. Like everyone else, they learn more and at a faster rate if interested or motivated.

At the time of transfer to secondary school many children with Down syndrome can understand what is said and asked of them in school, provided the vocabulary used is within their knowledge and the topics are within their life's learning experience from home and their previous school.

Description of speech and language skills from formal assessments can be misleading to staff unfamiliar with the tests. For example, an age equivalent for understanding grammar of around 5 to 6 years is good for an 11 year old who has Down syndrome. This level of understanding is sufficient for understanding the grammar of everyday language at school and at home, including lesson delivery, given that the pupil will have an assistant to repeat what is required of him or her, write down key points in a list, and help to ensure that he or she understands and can remember. Vocabulary knowledge is typically higher than levels for grammar, and is sometimes age appropriate.

Speech and conversation skills vary enormously and some young people experience great difficulties in learning to speak clearly and in grammatically correct sentences. This does not mean they understand less than more articulate pupils with Down syndrome. Many pupils will also have sufficient use and clarity of spoken language to convey their meaning, although rarely does expression of ideas in language match their understanding. Communication can be easily affected by situational factors. A hostile environment, unsympathetic listener, anxiety, perceived pressure, embarrassment or lack of confidence may result in discrepancies in the individual person's communicative skills and performance in and out of class.

Delays in gross and fine motor skills are associated with Down syndrome

These will influence handwriting ability and participation in sports in particular. Information about the pupils development of motor skills, agility, participation in sports, issues related to health (e.g. heart) and fatigue levels is also relevant for training staff, especially on a large, multi-level site or where location of the Learning Support Department is at a distance from many of the classrooms.[38]

Academic attainment levels, UK curriculum

In our experience, pupils around the age of transfer to secondary school often have attainments levels between W (working towards level 1) and level 2 (average for children aged 7 years) on the UK National Curriculum. Their skills continue to develop, with some pupils working at around level 3 (average for children aged 9) towards the latter part of their secondary education. At transfer age 11 to 12 many pupils have begun to understand money, are learning early multiplication and division and to tell the time. Literacy attainments are usually to a higher standard than achievements in numeracy, and pupils are often working at around a 6 to 7 year level at the age of transfer. Some pupils have literacy skills beyond this level at age 11, and may be above their chronological age in reading ability, but may still have weaknesses remembering and understanding the information they are able to read, depending upon their language knowledge. Some pupils with lower levels of skill attainments have similar levels of understanding and good social skills that help them to succeed in secondary school. Social and academic skills will continue to develop with increasing age, school and life experience.

We have observed that secondary education has some advantages compared with the last two years prior to transfer from primary school. Often Learning Support is better developed and resourced in a large secondary school and pupils benefit from working with a variety of specialist subject teachers.

The curriculum and differentiation

Not outside the range

In our experience, there are usually other pupils in large comprehensive secondary schools working at similar levels of academic achievement to pupils with Down syndrome, particularly in literacy and numeracy. If there is a need for secondary school staff to become more skilled at meeting the varied needs for a wide range of pupils, schools can arrange training for subject teachers on differentiation and lesson planning.

Each individual needs a different amount of support or help to access the information and participate in lessons, and with adequate differentiation by the teacher, clear visual resources or visual aids, and help as necessary for each individual, all lessons can be successful learning experiences for the majority of young people with Down syndrome.

Teacher's responsibilities

It is the teacher's responsibility to ensure that the standard of differentiation required is achieved and to identify areas for development when working with Learning Support Assistants.

Arrangements between the teacher and Learning Support Assistant for the level and type of support the pupil needs during whole class teaching, working in pairs, small groups, independently and for peer tutoring will also need to be established and developed. Communication between subject teacher's, specialist support teachers and Learning Support Assistants supporting different subjects is essential and school should plan for meeting time or establish other means of communication and feedback between all involved. Arrangements for managing pupils individual education plans (IEP) and developing cross curricular skills offer opportunities for improving communication channels.

Well-structured lessons

Lessons should be well structured with an outline of content and aims at the beginning, summary of key points as the lesson progresses and a review at the end. If transitions are signalled clearly, and the lesson is delivered with enthusiasm, clarity and a rapid pace then principles for good teaching have been applied. If a teacher communicates a brief and simple form of each lesson to the pupil and assistant, ideally with written notes, and obtains resources or indicates to the Learning Support Assistant how and where to obtain resources and activities to teach and illustrate key points, then most lessons can be accessible to the pupil.

Lesson plans in advance

We think it is good practice for lesson plans to be given to assistants in advance of lessons, to enable the assistants to be more confident and have more authority within the lesson. This is especially important for assistants supporting pupils with variable behaviour. Assistants may also have their own ideas for suitable resources, pictures and practical materials, and knowledge about the lesson in advance enables them to use their skills as Learning Support Assistants to the full.

Main points and small steps

Trained and experienced Learning Support Assistants will know how to break down information into small steps, will try not to teach too many concepts at once and can help to present work and activities visually. Writing frames are particularly helpful for differentiating input (in all subject areas) as well as aiding written output. Pupils should be encouraged to convey their understanding and ideas through writing, with key words, lists or maps, so that they develop the main purposes of writing, without the simultaneous need to construct grammatically correct sentences.

Additions to serial presentation of information through flow diagrams, summaries or continuous text, include concept maps, story webs and boards and other visual ways of representing information and identifying associations. These strategies are useful for input and output of information and are particularly useful for those with writing difficulties or who find it difficult to plan and sequence a series of ideas and sentences. Creating grammatically correct sentences can be targeted separately, or after the main points have been established. Work on sentence formation will help to develop the pupil's spoken language skills. These methods can be used to assess comprehension and can be applied to social as well as academic learning.

School development for inclusion

Secondary schools are working towards becoming more inclusive for all children. The number of pupils with significant needs influences the priority a school gives to creating change and developing adequate school procedures to achieve success. This point is made in an article about a secondary school that accepted a relatively large number of pupils with moderate and severe learning difficulties in one intake due to policy change in the London Borough of Newham [39].

Staff need training and support

At the classroom level, not all staff are willing or able (without help and support themselves) to understand, teach, plan lessons, prepare work and provide homework for their new pupil with significant learning difficulties. It is our experience that most are willing to try and are usually surprised by their pupils' abilities as well as their own skills. We may have experience locally of schools with particularly good attitude, intentions and procedures for delivering and developing inclusive practices, and hope that we do not have an over positive view of the current state for secondary age pupils with Down syndrome.

Learning Support is a central facility of the school

If schools are planning to develop excellence, the Learning Support Department, a room for preparation and display of resources, a photocopier, computer(s) and colour printer should be located in the 'heart' of the school, central for easy access by teaching staff, support staff and pupils. 'Learning Support' will be an important and integral part of any comprehensive or non-selective school. All staff should know about the procedures for using facilities and obtaining resources for all pupils with learning disabilities and other individual needs that they teach. The design of the Learning Support Department should allow room for preparation and storage of resources and room or other areas for small group work. The Special Educational Needs Co-ordinator (SENCO), support teachers and learning support assistants should have adequate office accommodation and other spaces for working and training. Staff (including Learning Support Assistants) should have flexible access to rooms, photocopiers, computer facilities, library, teaching resources, and publications for staff development and training.

Understanding funding

Knowledge about the school budget and training in allocation of funds towards learning support and for materials for pupils with special educational needs is also advisable. Many teachers do not understand the funding for meeting pupils needs, and honesty about funding arrangements and the school's responsibility to spend its money for pupils with additional needs for the benefit of those pupils is likely to be helpful. Pupils with additional needs do cost more money to educate and include and funding arrangements allow for this. Spending extra money on pupils with additional needs does not 'take away' resources from others. Initial outlay on books and resources or staff training, initiated due to the arrival of a pupil with Down syndrome, will benefit many pupils who do not have Down syndrome and help the process of making the school more inclusive for all pupils.

The responsibilities of Heads and Governors

School Governors should be included in training, and senior management must take responsibility for developing good practice in this field. At training days we occasionally meet special educational needs co-ordinators and heads of department that are very concerned about how to gain co-operation of staff to differentiate work to the standard required, as well as for treating all pupils with equality, respect and sensitivity. It is clear that these issues are not about having a pupil with Down syndrome, they are about weak practice for many pupils and require action from the senior management of the school. Fortunately, such schools are in a minority in our experience, although all schools require more work on differentiation to the level that enables greater numbers of pupils with moderate and severe learning difficulties to be successfully included.

New challenges for pupils

Size of school and independence on site

Most of the young people we know have adapted extremely well to secondary schools they have transferred to with other members of their primary school. Learning how to function in a large school (up to 1900), move location from lesson to lesson and be a member of a tutor group has not been difficult. Many pupils benefit from a clear plan of the school, colour coded, showing subject areas and key staff names. Concerns about the pupil's ability to adjust to an increased school size has often been raised as reason for not continuing from a primary to a mainstream secondary school: our experience would suggest the opposite – that the experience of responsibility and independence in a large community school has been positive for most young people. Secondary school sites, although large and complex compared with most primary schools, are small compared to the wider community we hope the pupils will live in as adults and they provide excellent learning opportunities for independently moving around in a monitored environment. Many pupils experience more freedom and responsibility than they have ever been allowed in their life before and enjoy this.

Change of location for lessons

Change of location, pupil groupings, subject teachers and sometimes a change of Learning Support Assistant can be refreshing from the pupil's point of view. The short breaks between leaving a lesson and joining a new lesson allow for valuable social interaction as well as exercise. When staff think pupils are ready or when pupils request to do so, they should change from lesson area to lesson area independently, meeting their assistants at the arranged classrooms, conduct themselves in tutor times and spend lunch and break times independent of additional adult support. Typically, this happens gradually during the first year. If pupils need support at these times it is preferable to use the support of peers rather than adult staff support. As for all pupils, it is easier to transfer and share a tutor group with at least some known peers from primary school. The support of friends will continue to be needed as pupils progress through school. It is socially inappropriate for pupils to repeat year groupings within school.

Using timetables

Mastering the use of a timetable has been straightforward for most pupils. Visual symbols for each lesson can be added to make the timetables more interesting using information technology. The use of a homework timetable needs to be learned and help is needed at home and from school to learn this new skill. Timetables for lessons and homework can be made easier to follow by clear presentation and use of colour.

Homework

Homework should be planned to reinforce teaching of the 'main parts' the pupil needs to learn. Set homework equitably for ability: home work is important but must be able to be completed by the pupil.

Type and use of support

Schools, parents and the Local Education Authority should explore issues relating to support on an individual pupil basis. This will ensure that each individual's learning and language needs continue to be supported when he or she transfers to and progresses through secondary school. It must be stressed again that pupils with Down syndrome are not all the same. Support for many pupils with Down syndrome is in the form of a learning support assistant, who, under the guidance of the teacher, sets work that can be completed independently, either in one chunk or in smaller pieces, returning as necessary for explanation, discussion, or summary near the end of the lesson. Learning Support Assistants should not sit next to pupils all of the time.

Pupils in the secondary schools we are most familiar with receive around 25 hours of learning support assistance and some pupils receive teaching support in addition to this. The latter is more likely to be necessary if the school does not have special teaching arrangements or focused teaching groups for children of lower ability.

Where 'setting' is in place, consideration should be given to placing a student with Down syndrome in a set with well motivated peers to ensure that the student has access to good models of learning and behaviour. Most pupils can manage with more than one or two assistants supporting them, but too many assistants can lead to inconsistency in behaviour management (which is important for some pupils) and lack of continuity between lessons.

Meeting additional needs

Focused teaching groups

Meeting individual needs by attending a focused teaching group for literacy [40], numeracy, conversation, social skills, life skills or studying an alternative to General Certificate of Secondary Education course is unlikely to present difficulties for the pupil in a school where going to different locations for different subjects or purposes is normal. Difficulties may arise if choices are made without the involvement of the pupil and discussion with the pupil's parents. Subjects that are hard for the pupil at the curriculum level may still be favoured by a motivated and supported pupil, and we advise that school staff do not prejudge what subjects each individual will enjoy and learn from based on their assessed abilities.

Speech and Language Therapy

Most pupils will benefit from continued speech and language therapy through their teenage years. Even pupils with clear, grammatical speech will benefit from help to continue to improve their understanding, knowledge, conversation skills, appreciation of themes and topic changes and social use of language. Many pupils may also have issues relating to speech clarity and require continued work to improve their production and use of spoken language. Guidance for staff on how to facilitate practice and help develop confidence in talking for different purposes and in different situations will also be helpful.

Behaviour

Pupils with additional needs in the area of behaviour rarely fall outside of the range of needs of some other pupils in school. If a pupil has behaviours that are considered very difficult to manage in school then a secondary school with strengths in including pupils with emotional and behavioural difficulties is more likely to be successful for meeting this pupil's needs. Most secondary schools have some pupils with emotional and behaviour difficulties: ways of establishing and communicating individual arrangements, working within the whole school behaviour plan and the co-ordination of curricular and pastoral systems will apply to all pupils with these additional needs. The secondary school's Educational Psychologist should be able to help with individual arrangements if the team in school needs more help. Knowledge based on research into the range and types of behaviour difficulties experienced by adolescents with Down syndrome can be informative,[41] especially if paired with evidence of successful interventions. In our experience, the most successful plans at school have been based on the principles and knowledge about behavioural interventions for all young people of secondary age. This includes understanding of special needs as a function of social context and using information gained from assessment, partnership with parents, quality of relationships, achievement in the curriculum and issues related to differentiation.[42/43]

Qualifications: developing alternative accredited courses for key stage 4

Change in this area has been rapid in the last two years and will continue to be so. New courses are being accredited, developed and introduced in most secondary schools as alternatives and additions to General Certificate of Secondary Education. The most recent development in alternative accreditation at key stage 4 is the introduction of the new Entry Level which is designed to recognise and accredit achievement for pupils at key stage 4 who are working below grade G in General Certificate of Secondary Education or foundation level of General National Vocational Qualification. If a team of staff have not yet been assigned responsibility for finding out about alternatives and their suitability for their pupils and staff, then the arrival of a pupil with Down syndrome will make this an additional need for school. New courses may not be needed for several years, but the school should have development in this area and be ready for the needs of the pupil with Down syndrome in years 10 and 11. Most pupils with Down syndrome take some General Certificate of Secondary Education courses, and are likely to continue to do so even with an increased range of alternatives. In addition, most awarding bodies have developed Certificates of Achievement which are designed for pupils at key stage 4 who are at levels 1, 2 or 3 or who are borderline General Certificate of Secondary Education candidates. Many of these are co-teachable with the General Certificate of Secondary Education courses.[44]

Creating opportunities for social learning

Pupils with Down syndrome vary widely in their social development and their skills will continue to develop with increasing age and experience. To help young people learn they need suitable learning opportunities: schools, families and communities need to work together to enable learning and development to take place.

A social curriculum should be an integral part of education in school

Social skills do not develop without help for many pupils who do not have learning disabilities, but having a learning disability places children and young people at greater risk of missing opportunities for learning essential life skills at certain stages of their lives. All involved need sensitivity to these issues and to work together to best help these young people. Pupils with Down syndrome may not learn some social skills as quickly as some other pupils in secondary school, but there are many years in which to develop and learn through continued education and social learning opportunities.

The pupil with Down syndrome should fit within a framework for the social development for all pupils. If they do not, then this framework may benefit from being made wider. If pupils are far behind peers in terms of social skills, school and parents should work together to target and improve social skills and behaviour. Encourage staff to look beyond the person's learning disability – an academic or cognitive assessment is but one dimension on which to measure and judge a person. High intelligence does not guarantee good social skills, good mental health or a successful career and staff should look for, reward and nurture positive characteristics for success as members of society in all pupils. All staff must treat the pupil with Down syndrome with the same respect as others of their age.

Relationships and social context matter

Typically, pupils with Down syndrome will know if they are not liked and can react badly if not treated well or treated equally. They may be less able to deal with their perceptions, to discuss them with others or to develop the 'buffers' that help many other pupils cope with difficult situations at home or school, through close friendships with peers. They are likely to be less able to protect themselves or compensate for poor treatment by teachers or other pupils.

Across the curriculum

Staff should try to ensure that skills are taught in ways that promote social inclusion, with respect for each individual's social learning needs and school context, across all curricular areas. Temporarily, this may not always be possible for some pupils in some teaching situations, but should always be a goal to be working towards.

Equality and responsibility

There may be more areas of equality than staff initially think in that some of the secondary curriculum is new to all pupils, for example, modern languages, learning more about music, new sports, new art and craft or dramatic experiences. The person with Down syndrome may not be particularly disadvantaged and may be as confident as others to try new activities, depending upon personality and learning style. Offering responsibilities in lessons, at break times, and in extracurricular activities, and rewarding appropriate, thoughtful and responsible behaviour during lessons will help to develop self confidence and self esteem.

Extra curricular activities

Most secondary schools have a range of extracurricular activities. If these seem too specialised or aimed at developing high levels of achievements in specific fields, then perhaps extending the range of clubs that can include pupils of varying ability should be a priority for school.

Access to the learning support department at lunch time, for access to games and activities, for conversation, or for learning and social support should be considered, as well as participation in a homework club. Pupils should visit and watch a range of school activities so that they can make their own choice of extracurricular activities. Encouraging a pupil to join several school activities and having social activities on the pupil's IEP will help to offer a range of opportunities for social learning outside of the classroom.

Personal and Social Education

Personal and Social Education (PSE) should not be focused exclusively on the needs of the pupil with Down syndrome. It should also include the needs of the staff and other pupils, and enable them to develop their understanding of the needs and expectations of pupils with learning disabilities. 'Citizenship' training is in place in many secondary schools, even if only in a small way. With more awareness, staff and peers are more likely to give appropriate feedback when interacting with the pupil around school, which will have positive effects on all aspects of social learning, including behaviour.

Friendships

It is likely that the nature of the 'mutuality' of some friendships at mainstream school during adolescence will change, although the support of friends who do not have Down syndrome can continue through to adulthood, especially if the person with Down syndrome has attended his or her local community school and continues to live in his or her community as an adult.

Informal friendships

Friendships can be helped to flourish informally, through peer support in class and around school. Even a little staff awareness of the pupils friendships and how to enable these to continue to be maintained, or at least not be extinguished through thoughtlessness, can make a significant difference to an individual's life. An excellent book by Debbie Staub entitled Delicate Threads [45] provides information on the importance of friendships and the benefits of inclusion, and provides useful suggestions for families, teachers and others interested in supporting children and young people's relationships in inclusive schools and in the community. Although most of the examples are friendships in younger children, the issues and advice discussed can be extrapolated to teenagers.

Planning peer support

Relationships can also be helped to develop through planning and structuring peer support for specific activities, functions, events and times of the day, in and out of school. Many schools use different 'buddy' systems and train their 'buddies' according to their function (e.g. to manage conflict, to play with or befriend pupils at break and lunch times, to help another to access an activity they could not access without help, to help manage bullying within school). In some schools, children as young as infant age are trained as 'buddies' for specific projects in school. 'Buddy systems' are becoming common in more junior schools and are usually implemented for specific purposes in secondary schools. As well as helping a pupil with Down syndrome socially and practically, pupils with Down syndrome should also be considered for training as a 'Buddy' for others, depending upon the systems in place and the responsibilities entailed.

Creating circles of friends

'Circles' of friends is an approach to getting people to think about the importance of having friends in our lives. This approach has been used in many different ways and by many teachers and educational professionals who work with children and adults with disabilities [46]. If a school does not have experience of managing 'circles' find an area Educational Psychologist with this as a specialism who can help to get a 'circle' underway. Training is available and is worth exploring locally for all pupils in school who are experiencing a degree of social isolation.

Creating opportunities

Unless a Local Education Authority is fully inclusive for all pupils with learning and language disabilities, it is likely that the pupil will need to have opportunities created for them to meet with people with similar disabilities to themselves. We think it is important that these opportunities are provided through adolescence – people with learning disabilities may not choose friends or partners that have similar learning disabilities but this opportunity should be there for them. In adolescence particularly, as young people explore issues that are important for them with their peers, and make their own choices and mistakes, young people with learning disabilities should not be prevented from doing likewise on equal terms with their peers. Currently in the UK, parents of pupils in mainstream secondary schools have the major responsibility for meeting this need – it is difficult for school to set up and manage suitable and supportive social and leisure situations. It need not be impossible though, especially if local special and mainstream schools are working together to develop extracurricular activities through after school clubs. Currently, participation in school sports teams, inter-school tournaments and competitive leagues is more likely in a secondary school for pupils with special educational needs with excellence in sport and leisure activities. Many young people with Down syndrome belong to local youth clubs, sports clubs, dance and drama clubs designed around their needs and skill levels that also include non-disabled peers (often siblings). In our experience, these groups have usually been initiated and developed by parents of young people with learning disabilities, sometimes with financial support from leisure services or social services departments or from voluntary organisations.

Life skills

Social independence

Developing skills for living independently are as important for pupils with Down syndrome as for all other pupils. The aims of the secondary school PSE curriculum are as appropriate as for any other child in a mainstream school. Pupils will need extra help understanding issues that are outside of their life experience - as do some other children. Those pupils that have led full and varied lives and been provided with many opportunities for learning about life by their families are likely to be more knowledgeable. Pupils should not be underestimated on account of having Down syndrome, but should be treated like other pupils, with staff at school understanding that most pupils with Down syndrome will have the same needs for skills in their adult life as others do – they will work, will need to manage their domestic affairs to some degree, will travel independently, will have friends and relationships, and will enjoy and participate in the same range of leisure activities as other people, depending upon their individual preferences. They will need to know how to recognise (and protect themselves) from abuse of all types and know how to seek help and who to seek it from. The needs for good teaching resources, differentiation and clear teaching of life skills are the same as in other subject areas. If it is difficult to develop a pupil's understanding and confidence in a large group situation then the pupil's learning may be better supported in a smaller, more specialised group situation.

Like everyone else

When pupils aged 11 and 12 have been due to transfer to secondary education, schools less experienced in the needs of pupils with learning disabilities have occasionally met the request with a response that the pupil needs to learn life skills and they do not know how to teach these. Our advice for staff and parents faced with this initial response would be to target discussion at the practicalities of life skills for all young people aged 11 to 12. What exactly does this pupil need to learn at this point in time that others can do and that he or she can't? How can we go about teaching him or her? This prevents 'life skills' and 'social skills' from being a vague area in staff minds with little relevance to the practicalities of life for young people of that age with and without learning disabilities. Schools for pupils with special educational needs can be helpful here (if not directly then through an Educational Psychologist), as all will have a curriculum for developing social and life skills, will expect increasing levels of independence with increasing age and should have administrative procedures to enable the development of cross curricular skills. No less should be expected in a mainstream school, and staff may be surprised at the skills their new pupils already have on entering school. What better opportunity for learning fundamental skills for work in society can there be than the requirement to be in a set place at a certain time with the right books and equipment, repeated many times throughout each day over a five year period on a mainstream secondary school site?

Individual plans

As well as obtaining guidance on life skills based on the life skills of peers of similar age, consideration should be given to the opportunity that each pupil has had to develop life skills. If they have not needed to develop life skills then they might not have done so. It is easy to become overprotective and to continue to provide too much assistance, at school and at home. It is our experience that young people with Down syndrome request independence from their parents as other young people do and it is important to recognise the benefit of increasingly taking charge of your own life for self esteem.

Working with families

The majority of pupils with Down syndrome at transfer to secondary school will be learning to prepare food, make their own packed lunches, make hot drinks, learning to iron and taking responsibility for household chores. They will also be preparing the equipment they need for each day for school and for extracurricular activities, choosing their own clothes and footwear, following fashion in music, T.V. and leisure activities by the age of 11 or 12.

In the community

Enabling the development of life skills outside of the home is more difficult to achieve at this still quite young age and development is typically slower, usually in relation to issues of safety. Young people with Down syndrome may feel restricted here compared with their brothers and sisters or friends, especially towards their mid teen years, depending upon individual circumstances.

Pupils close enough to walk to school without an adult (but with the support of peers) or with good bus routes are at an advantage, and steps can be taken gradually to achieve these skills while offering reassurance to the adults that the pupil is safe. Carrying and using a front door key (even though the home may not be empty on return from school) and short periods of time left at home without an adult should also have been considered by around the age of 14 to 15 for most pupils. It is extremely helpful if the whole family develop more of an interest in using public transport (and walking), know the bus routes and teach the geography of the community in which they live. Being driven about in a car will not teach these skills, although knowing how to 'phone for, give a location, use and pay for a taxi is an essential life skill.

Handling money

Carrying money, not losing it or giving it away, is often learned in junior school, beginning with small amounts of money. Opportunities for spending money are greater in secondary school, including buying lunch in a canteen. Again, try to use peers or 'buddies' to teach these skills, and in life skills teaching relate case studies for how to ask for help or to get yourself out of an overwhelming or 'uncomfortable' situation to daily life in school, as well as to the wider world.

Use accredited courses

Accredited courses in key stage 4 that develop life skills and result in a recognised qualification for the pupil at age 16 are likely to be the best way of ensuring that a pupil has been given adequate teaching of life skills through a curriculum. Learning life skills through real life experience requires the co-operation of families and communities as well as a course with learning based at school. Homework, work experience and other work assignments help to develop skills for living with more autonomy and to prepare young people for more vocational learning at Colleges of Further Education, where work in learning life skills will continue.

Transition meetings

While the article has focussed on how to plan for each pupil's life and education in the secondary school, the planning should start at least a year before a young person is due to move. A Transition meeting is essential and should be attended by all involved, including pupil, family, staff of the current and future schools in order that the secondary school is fully aware of the achievements and needs of the pupil. While academic needs are always discussed, social needs should also be on the agenda. It might be helpful, for example, to recruit a circle of friends who are also moving to the same secondary school to specifically support the student through the transition.

Conclusion

Most pupils in our experience are doing well in secondary schools that have willingly accepted them and that are committed to meeting a wide range of individual educational needs.

Good practice for children with Down syndrome attending secondary schools is developing fast as increasing numbers transfer every year. At present, issues for developing good practice are the same as those for including all pupils with a wide range of individual educational needs in their local secondary schools. The majority of young people with Down syndrome included in mainstream secondary schools need a high level of help and support to function well, and good planning for each individual is a key to success. Good communication within school between all staff and good communication with parents is essential to success. The role of parents has been discussed in relation to a number of the topics discussed and teamwork, recognising parents as full members of the education team, will greatly improve the outcomes for child, family and school.

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Acknowledgements

The education support work on which this article is based is supported in part by a grant from Portsmouth City Council.

The authors would like to acknowledge the contribution of the staff and pupils of St. Lukes Church of England Secondary School, Portsmouth; Mayfield Secondary School, Portsmouth; Bay House Grant Maintained Secondary School, Gosport; Crookhorn Secondary School, Waterlooville; Oaklands Community School, Southampton; and Swanmore Secondary School, Swanmore.

The Authors

Sue Buckley is Professor of Developmental Disability at the University of Portsmouth and Director of the Centre for Disability Studies, in the Department of Psychology.

Gillian Bird is Director of Services and Training for Down Syndrome Education International at the Sarah Duffen Centre, Portsmouth.

Sue and Gillian both provide consultancy and training for schools and LEAs through The Down Syndrome Educational Trust.